Hey, this is another post - significant improvement this month!
Just a few things to note and be grateful for:
We had our air quality tested last week as we're trying to solve why the filters on Josiah's ventilator and suction machine are turning grayer faster than they should. This started being a problem as autumn settled in. The good news is that there's nothing in our building that we have to be concerned about: the structure is healthy and Marie (with her respite helpers) does a great job of keeping the place clean. The bad news is that we haven't been able to isolate the particle that is showing up on the filters. In the case of the ventilator, it's really weird because the air has to pass through another filter before reaching the one that is going gray. But the really amazing part is that the air quality tester opted not to charge us for his time, just the lab results - a saving a $300!! Wow! That was a big blessing: thanks Chris.
A couple of days ago Josiah took his first steps!! Marie has a physio exercise for him where he stands between her legs as she sits on the floor with her knees in the air. Josiah supported his own weight (she just uses her hands to give him balance) and he took three steps all on his own! Yay! We're really excited, especially since we found out this week that he's going to be fitted for foot/leg braces in the beginning of December and will get his walker sometime in January. So rad.
Marie and Josiah were also in for check up at BC Children's this week. Everything is looking good and Josiah's ventilator pressures have been lowered from 18 to 16 because he is demonstrating that he can handle his airway much much better. Incredible.
Finally, another 'Praise God' to note: we think Josiah must have aspirated on a little saliva/mucus today during trache ties (yes, he is unfortunately a monster now for his ties - a little too smart for his own good as he approaches the terribles two's). It didn't take long for him to be coughing a lot, elevated rate of breathing and heart rate, sleepy, etc. We caught it late (during dinner really with our guests - yikes!) but we prayed, did a lot of suctioning and chest physio, and Josiah was finally able to bring up everything that was stuck down there! Whew. He ended the night on a very good note, laughing uncontrollably as mommy and daddy made silly noises and tickled him all over ;)
Further, he's demostrating a new side of smartness which is becoming a gateway to a whole slew of potential dilemmas: when his nightlight musical aquarium turns off, he does what he can to get our attention in the next room. Tonight, he disconnected himself from the ventilator! Argh!
In Hope & Expectancy
- Andrew, Marie & Josiah
3 comments:
wow you do have a handful there don't you, especially if he starts walking. watch out!
I'm glad your air is good. Are you able to purchase a new tube or part of that filter that's turning gray too quickly? Maybe there's something electronically wrong with it.
Absolutely amazing news - how wonderful that Josiah has taken his first steps! Andrew and Marie- you are such tenacious parents - your little guy is so blessed that you have been attentive to his every need. God is obviously rewarding you for your loving efforts. I'm still thinking of you and praying regularly that God will give you the strength and wisdom you need moment by moment.
Love, Bev (& Ross)
It's so good to hear how well you are all doing. I often think of you and pray....I may have to begin praying even more once he starts walking ;) He sounds like such a fun character!
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